Is anyone else struggling to access treatment?

NZ81

I have joined today as I cannot find any information about others in the same situation as me and I’m feeling down and frustrated at the moment.

I have Psoriatic arthritis which was diagnosed 7 years ago. I have tried sulfasalazine, methotrexate, and tofacitinib so far. Tofacitinib seemed to be working for me however I can no longer access it as I can only have it delivered by a Homecare company who cannot deliver on days when I’m off work.

I had a review with my rheumatologist this week and really don’t think he understood this at all. He said as I have been ‘managing’ without medication I should continue and see how I feel at my next review. I feel utterly awful. I’m crying in pain every day , my GP refuses to prescribe me anything other than an anti inflammatory and now my rheumatologist won’t give me medication either. I fear I’m going to lose my job as I am struggling to keep up with work. My relationship and family life is suffering and no one is listening to me.

I made an appointment again with my GP today to try and explain how this is affecting me, their suggestion was to explain this to my rheumatologist at my next appointment…….in April!!!

I’m not sure what I’m expecting by posting here, I guess I just want someone to understand how hard this is. I’m 41 years old and I feel like my life, as well as my body is falling apart.

noddingtonpete

Hello @NZ81 and welcome to the community. We are a friendly and supportive group and I hope that will be your experience as well.

I understand that you have psoriatic arthritis and are struggling to get medication and that your GP and Consultant aren't being of help. Can you try a different GP? or try and get an earlier Rheumatologist appointment? I know it is difficult these days. What you get by posting here is support and friendship from people who have an understanding of what you are going through and are on the journey themselves. I've also put a couple of links in from our website that might be of use.

https://www.versusarthritis.org/about-arthritis/managing-symptoms/emotional-wellbeing/

and

https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

and we also have a Helpline

https://www.versusarthritis.org/get-help/

Please keep posting and let us know how you are getting on and I am sure that others will connect with you to share their support and experience as well.

With very best wishes

Peter (moderator)

stickywicket

Arthritis does have a knack of regularly throwing up these really difficult situations.

I'm afraid your GP can only prescribe NSAIDS and pàin relief, not DMARDS. Your rheumatologist's attitude seems odd and unhelpful, though. How are your recent blood tests? Do they show your disease to be under control (which, I guess, could explain it) or not?

I don't do biologics so don't undersrand how the delivery system works. Would they be able to deliver to your local pharmacy foŕ you? Oŕ, could a friend take delivery?

NZ81

Hi,

Thank you for your replies. This is a new GP. I had a great relationship with a GP at my old practice but unfortunately she retired so I moved to a new practice closer to where I live. They have prescribed etoricoxib but no pain relief. I have asked but everyone seems to want to ‘see how it goes’.

The Homecare situation seems to be playing a big part in this. My rheumatologist said almost all of their biological are delivered by the same company so he is at a loss as to what he can prescribe. My rheumatology nurse did try and help but I have no one else who can wait in to accept a delivery ( they won’t give a time slot, so potentially all day) , they can’t put it through the letterbox, I can’t have it delivered to my workplace, and another chemist, the hospital pharmacy and my GP are all unable to accept due to some technicality with prescribing rules?

Ive spoken to the Homecare company who do deliver on weekends, just not to my area. The rheumatologist wasn’t aware some areas were excluded from this. It’s absolute madness. I just feel worn down by it all. I experience a lot of fatigue and feel like I don’t have the energy to negotiate this.

I will definitely look at the information shared. Thank you so much.

stickywicket

The only other thing I can think of is to contact your local PALS and see if they can help. You can find out how here https://www.nhs.uk/service-search/other-services/Patient-advice-and-liaison-services-(PALS)/LocationSearch/363

NZ81

That’s a really good idea, thank you.

I feel a little less defeated today and have managed to get an appointment with my rheumatology nurse next week. I feel she listens more and can hopefully come up with some suggestions.

TLee

This is precisely the reason for my joining today. I have osteoarthritis, most severe in my left hip. The pain is like nothing I have ever felt! I have been dealing with my primary care group for probably 2 years on this. I had a steroid injection that helped a bit for around 2 weeks. I did physical therapy, but the PT told me going in that I was unlikely to see much improvement and, sure enough, after around 5 visits she said it was as good as it was going to get & ended treatment. Last doctor visit I was told to take an additional dose of Tylenol & schedule another useless shot. I don't know if I can demand a hip replacement, but that is what I feel I will need to do. I know that insurance companies will not approve surgery until they feel that all other options have been tried. I don't know if that is the issue, or if the doctors I've seen are being dismissive--I have felt this at times, with one almost shrugging his shoulders as if to say, You're old, you have arthritis, live with it (I'm 62, and he looked around 12!). Sorry for the rant in my first post, but it can be very depressing and discouraging. I am hoping to get encouragement here, along with suggestions for dealing with pain, but for now I'm venting.

Tom

Welcome to the forum, @TLee . I see that you have osteoarthritis, the worst joint being the left hip. You have been dealing with your primary care providers for two years but are now being told that there is nothing more that can be done.

Have you seen a consultant in orthopaedics? If not try getting a referral through your GP.

Here are some links to information on our website:

https://www.versusarthritis.org/about-arthritis/conditions/osteoarthritis-oa-of-the-hip/

https://www.versusarthritis.org/about-arthritis/treatments/surgery/hip-replacement-surgery/

 Best wishes and let us know how you get on.

 

Tom, Moderator.